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True Stories: Living with the Threat of Anaphylaxis

Written by Kimberly Holland
| Published on April 19, 2013Medically Reviewed by George Krucik, MD, MBA
on April 19, 2013

Three parents and patients share the day-to-day aspects of living with food allergies and the risk of anaphylaxis.

This content is created by the Healthline editorial team and is funded by a third party sponsor. The content is objective, medically accurate, and adheres to Healthline's editorial standards and policies. The content is not directed, edited, approved, or otherwise influenced by the advertisers represented on this page, with exception of the potential recommendation of the broad topic area.

Start Talking About Allergies Early

Daniel’s son Ben is a healthy, active, vibrant 3-year-old. He attends preschool, goes out to eat with his parents, and enjoys play dates at his friends’ houses. In almost every way, he is your typical preschooler. However, Ben is allergic to tree nuts, a sensitivity his parents discovered just before his second birthday when a family friend gave Ben a cashew. Within an hour, Ben’s skin was covered in itchy hives, and his body was quickly swelling. Even more troubling, he began showing signs of breathing problems. That’s when his parents knew it was time to make a trip to the emergency room.

Healthcare providers quickly rushed Ben past triage and began treatment with epinephrine. Luckily, the injection stopped and eased the anaphylaxis reaction Ben was having. Today, Ben’s life is just like most any other toddler, except for one detail: “We have become super cautious about everything he eats. We read labels very closely,” Daniel says.

Daniel and his wife, Stephanie, don’t leave all the work for themselves, though. Ben is very active in avoiding tree nuts himself. “He’s very verbal, so he will tell his teachers or friends’ parents that he is allergic to nuts and ask them to make sure what he eats doesn’t have nuts,” Daniel says. “He knows he doesn’t want to go to a hospital, so he’s in a good place and can talk to adults about his allergies.”

Let Kids Be Kids

When she was 18 months old, Leah underwent several tests to determine what was delaying her speech. As part of standard testing, her speech pathologist placed a bit of peanut butter on Leah’s cheek. The next morning, Leah’s mother, Melissa, went into her bedroom and found Leah with swollen eyes, swollen lips, and a swollen, red face. Their pediatrician instructed her to go straight to an allergist who conducted allergy testing and discovered that Leah was allergic to peanuts. She would later test positive for tree nuts, too.

As she grew up, Melissa paved the way at schools, overnight camps, and with friends’ parents, making sure they were aware of Leah’s allergies. But she let Leah look out for herself, too. “She’s amazing the way she handles [her allergies]. When kids bring treats for their birthday to school, she checks the labels closely. Sometimes she will e-mail or text a photo to me to see if it’s OK,” Melissa says. “When we go out to eat, she will call the manager over to the table. She’ll explain her allergy, tell them what she’s thinking of getting, and review cross-contamination concerns with them. She’ll ask them to wash the grill and cutting boards really well before they make her order.”

Her confidence may stem from the fact that Leah’s parents have worked to give her a “normal childhood.” “I’ve met parents who let their child’s allergy define their lives. They don’t let their kids go anywhere, never go on vacation or eat out at a restaurant,” Melissa says. “I didn’t want that for her. I wanted her to be just like all the other kids at her school. And she didn’t want to look different, either.”

That, in a nutshell, is also Melissa’s advice to parents of children with food allergies: “Be vigilant. Teach them to advocate for themselves, and make sure they lead a normal life.”

Find a Doctor You Trust

Erica, a court referral counselor, didn’t grow up allergic. She led a perfectly normal life, never avoiding any food for fear of a reaction. When she was 26, she became pregnant with her first child. That’s when she began having allergic reactions to almost everything she ate. “I started reacting to different foods, things I had eaten my entire life. My throat and the roof of my mouth would become scratchy. My throat would start closing up, and I would have breathing problems,” says Erica, now 31. “I’d eat something new and react to it. It was puzzling and frustrating.”

After her daughter Aly was born, Erica underwent allergy testing. The results: She is allergic to all fruits and vegetables, soy, peanuts, tree nuts, shellfish, and corn. (She jokes it’s easier to tell you what she’s not allergic to than what she is.) Corn was the hardest allergy to pinpoint. “Corn is in everything. I would brush my teeth and have a reaction. I had a reaction to the epidural I received during labor,” she says. “It wasn’t until I ate a piece of corn on the cob that I realized the source of the problem.”

To suddenly be allergic to almost everything she ate was distressing—and isolating. “Each time I ate something, I worried if I’d react. Plus I worried about Aly, if she was allergic, too. I wouldn’t even feed her a new food unless someone was with me to rush her to the emergency room if she had a reaction,” Erica says. “I really relied on my doctor in the beginning to help me sort through what was going on, which is when I realized how important it is to have a good relationship with your allergist.”

The first doctor Erica saw “wasn’t ideal,” but she soon found a second allergist who took the time to listen to Erica, her concerns about herself and Aly, and her worries with getting pregnant again—she wondered if her allergies could get worse. The answer to that: “I have a 33 percent chance of getting better, a 33 percent chance of staying the same, and a 33 percent chance of getting worse.”

Her new allergist will also conduct allergy testing on Aly once she is older. “I can’t stress how important it is to find someone you can talk to, someone who truly answers your questions,” Erica says. “It will make a big difference in your quality of life and, honestly, in your sanity.”

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